Thursday, August 16, 2012

What's been going on in my head...

I haven't been posting much these days and its probably as good a time as any to say why. (its also a long one, so refresh that cup of coffee first then sit down for the story)

The clinical trial that I took part in a number of months ago called me in May to go over the results. Entirely unrelated to the study, they found some issues with the gross anatomy of my brain. Reviewing my prior MRIs, it was there as well. So in this fortunate series of events, the doctor discovered something called Arnold Chiari Malformation, Type 1.

This is Arnold Chiari Malformation, as basic as I can describe it: my brain was jostled into the wrong place, so that the bottom part of it (the cerebellum) is pressing through the hole that exits my skull (the foramen magnum). This acts like a tub stopper, causing a build up of cerebrospinal fluid and blood. That build up puts pressure on the brain and alerts the Arnold Chiari patient of the number 1 symptom: a severe headache.

this is from the chiari institute.
you'll have to believe me, that its way more satisfying to see one's own brain scan and not a diagram
(then an invisible pain is made tangible and its finally something)

I still have a concussion (as evidenced by the clinical study). I have concussion symptoms not explained by Arnold Chirai. But I also have Arnold Chirai symptoms not explained by concussions. Then I have a handful of symptoms where the two overlap. Picture, if you will, a venn diagram with things like "constant headache, noise sensitivity, sleep disturbance, difficulty concentrating" in the center. After they treat the Chiari, they have stressed that there is no nice, neat percentage of a chance they can put on these overlapping symptoms going away. They have no way of knowing what my concussion is like, underlying the Chiari. I have two extremely rare circumstances put together, which makes a prognosis near impossible. (Keep in mind we're coming off of 4 really really tough years, so 'no guaranteed result' is still music to our ears)

But we have to treat the Chiari. I've had fluid flow scans to show that there is blockage. I have significant Chirai specific symptoms. Without treatment, it will remain, forever (and possibly get worse). I have two brain conditions now and the good news is that one can be handled.

On a more positive note, this news is also the first hope I've had that things could change for me. Neil and I had braced ourselves for a future where I wake up every single day with this almost unbearable pain. I felt like I was in a long, dark tunnel. Hearing this, it seemed like I could take a short cut into the light. The idea that I could begin to feel even remotely better is such a gift. That I could have room to breathe... even a inch... changes our whole future

For the few of you who don't already know, Arnold Chiari treatment involves a "decompression", which is a misnomer that means brain surgery, but sounds like putting your feet up after a long day at work. They remove my top few vertebrae to gain access to the descended cerebellum (called tonsils), they shave open my foramen magnum wider so fluid can flow again, and they go up to lift the dura (layer surrounding my brain) to secure my brain in its proper place. For the medically fascinated, you can watch versions of it on youtube. I think its all amazing. (For the weaker stomaches that don't want a visual but want to know some more, here is a good link about what I have comin)

My hospital stay will be 3-5 days, then a pretty brutal 3 month recovery. But here's the good news friends, I have an A+ in recovery! If I were to put anything on a job resume after all these years it would be "enduring massive amounts of pain" (and I would sub-bullet point that with "getting stitches without Novocain" and "repeatedly lifting my body weight into a truck on a broken shoulder" and "having a constant headache for over 1,550 days" ) ... which makes me the perfect candidate for this particular venture.

My surgery is scheduled for August 22. For anyone out there keeping track, that's the date of our 2 year wedding anniversary. Soooo, there's that. People keep asking us how we are doing and I think having the surgery on our anniversary seems to sum it up well. Sure we slyly joke about staying in an 'all inclusive' when people innocently ask "what are your anniversary plans?" but honestly, its really the pits and not normal to spend that day with a gauze wrapped head and a foley catheter. Sure we know there will never be a day in our future when life will be perfect - there will always be some problem or another - and we know some people truly have it worse... however, if I'm being so very honest, there are rare times we can't help but look at the lives of our peers and we can't help but compare. In those times that old sports chant comes to mind... "nuts and bolt, nuts and bolts, we. got. screwed."

But we're not special, every single one of you have probably uttered the phase 'life isn't fair'... I'm allowing that my husband gets to say it too, as he spends the afternoon of our anniversary holding his breath and hoping the statistics are in my favor, instead of making dinner reservations.

We go through everything together. I know there's people out there that have husbands that travel or even more difficult, husbands that are in the military. But all I know is our pattern and our pattern is that I struggle every day and he is by my side every day. Which makes this so terribly hard. Because he will sit in a waiting room and I will wheel off to an OR. And that's right about the time when I want to hold his hand (on our anniversary).

But we're also not special in that we're not alone in joy. Every single one of you has probably said 'I can't believe how lucky I am.' ...when I wake up and see him I'll feel that sentiment in waves. And then, so his fear can melt away and he'll know the wife he loves is with him again, I'll say something cheesy like "you make me the happiest lady in the whole entire neuro-surgical recovery unit"

But how are we really? I think best answer is that we are resilient. And we do have hope with our fear. And we are okay. And we feel that we can look back on this day as another type of milestone - "The day when our lives started over, yet again." Once the pain passes (which I have to believe it will), we can have a fondness for it all. And we'll thank God for a sense of humor. So this day being such a big day for us is like this whole thing - it has ups and downs and its all kind of overwhelming.

Many of you have been so generous and kind and amazing and asked us what you can do for us. Right now the answer is simple "we don't know." This is uncharted territory. Right now we are saying a firm no to food and no to anything else. But that could change - Neil does love Cliff Bars, he might get a craving - or I might be able to keep some food in my belly at some point and then we might celebrate by accepting groceries. (you see, they expose the equilibrium and vomit center of my brain to air during the surgery, which must be like spraying a cat with a squirt gun, apparently it gets super angry)

Part of us wants to do what we did for the first months that we knew about all this and stay in a cocoon - only emerging on a day when we can say with joy and NORMALCY, "oh, me? lately? I'm just hanging out. My co-workers are lame. Work is boring. Life is great. Yada Yada. how about you?"

But we have reluctantly grown to accept that is not where we are right now. We are uprooted. We have such big emotions all the time - big hope, big fear, big excitement, big nervousness, big joy, big uncertainty. Just venturing out on a limb to share this isn't easy. Its hard at a time when we feel buoyant with hope to greet someone's sadness. And its near impossible when we feel overwhelmed by what we're facing to hear encouragement or to hear - well, anything. That leaves all you lovely readers and caring hearts in quite the predicament of how to interact with us, doesn't it?

But we ultimately decided its better to be exposed. To risk the highs and lows with everyone. Because since we started telling people, we started getting cards in the mail (and texts and phone calls). Simple, sweet, messages. Mostly they say "thinking of you." and mostly they come when I feel like I'm pulled so tight I'll break. Its made our vulnerability worth the outpouring of support.

Although We're always struggling with the idea of how much to share and how much to keep private, we came to the decision to use this blog as the place to be open. My limited readership is mostly family, close friends, and 4 people in Russia. Since my humble blog isn't an internet sensation, we thought this would be the best place to inform you on what's going on.

So you don't need to call and ask and so Neil doesn't need to spend the bulk of his time updating individually - Neil will be taking over my blog. He will post on this site on the day of surgery and in the long months following. You can check in for updates on me without feeling like you're 'bugging' us and I promise he won't go into detail when I spend the whole day puking. (He's also concise - which means you get a break from my run on sentences.)

Dear loved ones (if you've read all the way to the end you are very dear and most likely a loved one),
I want to thank you now, because our most fervent prayers 'to feel lifted up in love, care, kindness, and support' have already been answered so fully we can hardly believe it. As a bonus, of course, it would also be really super great to make it through surgery okay and then not have these headaches anymore either. Thank you, thank you, I really do adore you all, four years and then some is a long time to pray and care so much, thank you thank you thank you thank you thank you


  1. Well said, dear friend. Vaya con Dios.

  2. I am so lucky to have you and to spend an anniversary with matter where it is. I am definitely terrified to have to watch them wheel you away from me but I will be comforted knowning that moment is the beginning of the end of your pain.

    I Love You

  3. Thanks for explaining this em, I thought I understood this deal, but I was missing some key parts. When you are ready to eat, let me know.

  4. Such an amazing post, Emma. Thanks for the explanation and vulnerability. As a bystander, it's continuously wonderful to watch you and Neil navigate this together. Heck yeah you are resilient! You guys are doing an amazing job. Love you!

  5. Our thoughts and prayers are with you both stay strong for each other! All our love! Ris and Tony

  6. Oh e. lots of love from me. And I bet the Sinai mb unit too...
    I miss you. And think of you often.

  7. Beautiful lady I will be sending you lots of loving healing energy! I am so inspired by your strength and resilience and Neil is a beautiful spirit to match your own! Love to you both! And when you do need something, please don't hesitate to contact me! XO. -Natalie bencivenga

  8. You are quite simply AMAZING but now it is time to try and let others do for you whatever they can, whether it be prayer, chores, trying to make you smile, maybe eventually cooking (depending on who is doing the cooking, ;). Anything and everything. Embrace it because it is a blessing.

    LOVE AND HUGS - Gabrielle

  9. Beautiful friend. I am sending you lots of prayers. You are possibly the most incredible person I have ever known. Could the love and support you have for each other be any more inspiring? Love you! Kate.

  10. I can't fathom a soul like you, a couple like you that God would not want to look after with love and caring. Our thoughts and prayers are with you. Heal fast, pain free, Godspeed. We love yinz! Tim, Anna Marie, Taylor and Keaton.

  11. I love you!! Praying for complete healing!!!

    Prayers of peace and healing!
    Aunt Stacy :) XO

  12. Hey lady, I just received your email and went directly to your blog. I caught myself up on your life right now and am in awe of you. I think of you often and tell your story to people that I meet and they are in awe of you too. However, I and they will be in even more awe of you with each passing day. You are so strong...stronger than I can even remotely express. I want you to know that I am thinking of you, praying for you and loving you from Olean, NY. And Neil, I have never met you, but man, you are phenomenal. I will be keeping up with this blog each day, hoping to hear as much as I can from afar. I love you Emma. Keep on keepin' on. Sending you a hug...